Saturday, November 26, 2011

Amberlyn, Hope & Loss

l.QQZvWzsWIUiHkSPt This is a post I need to write, but have been avoiding. It's not about Jackson. It's about my friend Amberlyn. In August, she found out she was experiencing rejection in the lungs she got in October of 2009. The doctors did everything they could to try to stop it, but were ultimately unsuccessful, and Amberlyn passed away on November 18, at the age of 22.

She wasn't my very best friend or confidant. We didn't talk every day, and had only met in person once. But she was so dear to my heart. She was the first adult CFer I came to know after Jackson was diagnosed, and not only a great source of hope and inspiration to me, but an outstanding person regardless of her medical background. In spite of all the time she spent in the hospital, she always had a dozen side projects going. She was the head of her own non-profit organization, Amber's Angels. She spearheaded projects to bring comfort and joy to children and families living in hospitals, especially during the holidays. She put together a concert series to bring music to kids who were missing out on their own summer nights, and made Christmas care packages for the ones who couldn't open gifts at home on holiday mornings. Even as she was unable to talk at the end of her days, she begged her mother to continue and not let these kids go without just because she was sick. She also was an avid supporter of the military, and families struggling with a deployed loved one. She held jobs outside the home and usually had two or three other side projects running at any given time. She refused to stop living, so when I found out that she had died, I was shocked.

I had noticed that I hadn't heard anything from her in a while, and had known that she had been back in the hospital quite a bit, and made a mental note to see how she was doing. In the business of moving my house and celebrating my best friends marriage, I didn't follow up as soon as I would have liked. Last week I got home to our old place for the last time after spending the day moving and painting our new place, and logged on to the computer to find a note from her mom that she was gone.

When she was first diagnosed with rejection, it dawned on me for the first time that I would outlive many of my adult friends with CF. There is a select group of incredible people around my own age who carry the same disease that my son does, whom I consider to be my extended family. They are undeniably strong, confident, persevering, and understanding without letting me indulge in self pity. They show me in word and deed the kind of promise my son can realize, and de-stigmatize life with CF. They make me a better parent to Jackson, and I would be lost without them. At the time I began to have this realization, I believed that the death any of these friends would make me less able to cope with Jackson's disease. It seemed like it would be driving home the potential for tragedy in my own life. But when it came down to actually losing someone I loved, it was just that. Amberlyn's death is not just some reminder to me that Cystic Fibrosis exists, and is an ugly disease. It is simply the loss of someone who had a great impact on my life and my outlook. It was about HER, not about me or my sadness. The grief seems oddly unrelated to how we came to know one another. Strange as it may sound, I am thankful for that. I am thankful that she was not just someone I clung to as an example of life being ok as my own child got older, but a person separate yet undeniably entwined with the genetic defect that introduced us.

I still have a very hard time believing I won't be able to talk to her again. That she will never tell me how much she adores Jackson and how she is keeping up with all that we do. I won't have the opportunity to visit her, and she and Jackson won't know each other as he grows up. I haven't accepted that, although I am trying.I looked for the pictures we took together when we went to visit her at Dell Children's in Austin, and I can't find them. I'm sick and sad that the brief moment we captured is also gone forever. I think every day of her mother, her family and friends, and the hole her absence leaves in their lives. I won't forget in time what she meant to me or to others. I will continue to support her organization and strive in my own life to remember to do what I can for others.


  1. Amy I'm so sorry you've lost a dear friend. Your words are perfect.

    She wasn't defined by CF and you haven't defined her by her CF.
    I hope we can guide our children to become as wonderful as people like Amberlyn. Strong, bright and passionate.

    I hope you find the strength to grieve and then embrace and cherish the friendship you had.

  2. Beautiful, Amy! Your writing is such a wonderful tribute to her! I know she would feel SO honored to read what you have written about her! I can't help but think of her as one of the many who have "gone before us" and benefited us all. Whether it be civil rights pioneers who took the hit for us, or those that suffered from medical hardship and disease before us and taught the medical community so much...she's one of the many for whom we have deep, deep gratitude. Thank YOU for sharing a bit of her beautiful soul with us...